is this a sinus flare op?

[splummer]

we just got back from the ER for the second time in 2 days. Oxycodone also didn't help. the rituxan infusion is scheduled for Monday morning in 2 days. I hope it helps.

[BookNut]

I want to thank every one for their help in trying to figure this out. I think people who have lived with wegeners have a better insight than even the best Doctors. After reading all your comments, I think the cel-cept was holding the sinus problem down and going off of it may have triggered a flare up 2 weeks ago. She needed to go off the cel-cept because after 2 years it was suddenly raising her liver numbers. [It's been a hard 2 weeks] but we will know what to tell the doctor Monday Morning. [That we are positive that it is a flare up.] Her last complete tests were only 10 days ago showing C-anca at 6.2, inflamation 1.4 and liver almost back to normal.

I advise people with any kind of chronic condition to seek out good forum/discussion groups like this one. Wegs was ruled out in my case - but I have stayed on here because I find so much valuable help and moral support with my severe asthma and sinus issues. I can reinforce what Pete said earlier about the importance of sinus rinses. I use a NeilMed and make my own rinsing solution. I mix a cup of picking salt with 1 up of baking soda and keep the mix in a sealed container. Then I mix distilled water in a half gallon jug with about 4 teaspoons of the mixture. Every morning (and also at night when I am really bad) I put two or three drops of baby shampoo in a NeilMed bottle and fill it up with my solution. I then lean over the sink and squirt the solution into my left nostril. As soon as the nostril is full, I put my finger on the opposite nostril so that the solution stays in the left nostril. Then I snort it out...along with lots of the gunk you say your wife gets. Then I repeat with the right nostril. I have also had some success with mixing a medicine in the solution. I used Betamethasone - which comes in a capsule. The capsule can be opened and the powder poured into the solution. It eventually dried things up too much, so I am not using it right now. But - ideas to check out with your wife's doctor. And ENT might be a good doc to go to. Best of luck to you. You have come to the right place!

[MikeG-2012]

I'm glad your doing ok now. It seems like the sinus flare-up at least for her has been the most painful of all. Now we're waiting for Blue Cross to approve the rituxan.

BC will give in, especially after an internal review. They finally talked to my Rheumy, and all was better.--they do NOT want to talk to the prescribing physicians, and when they do, they get an earful!!
Be persistent if you have to! You are your only advocate, so don't give in, ever!!

As far as the sinus pain. I used a wet washcloth and a small hand sized heating pad (put the heating pad in a plastic bag) over my face. Keeps you from running the water heater out of water. Also, rinse, rinse, rinse, rinse. Did I tell you that rinsing helps. I think you should rise often. Maybe even rinse a couple times a day! Aggressive rinsing helps. (-8

[splummer]

We just got back from the Ritexan infussion and so far her pain seems much better if it keeps on. I think because ct scans and xrays didn't show any thing her R Doctor is still not convinced in a wegeners flare and has her scheduled for an MRI tomorrow.

[me2]

Don't be disappointed if the pain creeps back up. This illness and the meds used for it are a roller coaster ride. I usually feel better after an infusion and then feel worse about three days later. I think this is because a horse dose of solumedrol is given with the infusion and it makes me feel better for a little while. I hope the MRI comes up with nothing for you too.
It's funny that with most of the tests we get finding nothing is good news.

[splummer]

me2 I hoped you were wrong but this morning it seems like the pain is starting to come back. Are you getting infusions now and is it for sinus?

[me2]

I am getting infusions every six months for some time now and I have always had sinus involvement. The only thing that really helps with the pain for me is treating the root cause of the problem which it sounds like you are doing with the infusions. For me the infusions were not an immediate relief from pain and from symptoms. The good news is that they did eventually work and I credit them with how well I am doing now. I wish I had a better answer.
The suggestions above for sinus are ideas that work good for me too . Especially the rinsing that Mike mentions. I would add ice packs for really acute pain. I put some ice cubes in a plastic baggie and then run a wash cloth under hot water. Wring out the wash cloth and wrap the warm cloth around the bag of ice. When applied it feels warm at first and then gradually the ice takes over.
It sounds like the doc may diligent in ruling out other causes for the pain. It will be good news to not find something else going on but kinda not good news because it may take some time for the pain to subside with the treatment for wg.

[splummer]

any one have any thoughts on this? after 3 trips to the EM she is now in the hospital for the second day now. 3/21 On Monday she had the ritxuen and the pain in her sinus/head area is still unbearable. An MRI didn't really show anything and her R Doc hopes the predizone and R help her. The hospital Doc after another ct scan is going to have an ENT put a scope up her sinuses to check for other problems and biopsy. This is is really getting serious. Are we don't the right things?? thank you

[Pete]

It usually takes several (4-6) weeks for rituxin to take full effect, so the lack of immediate improvement is not surprising. How much prednisone is she taking, and when did she start? The sinus scope should identify what's going on. Hope she gets to feeling better soon.

[splummer]

thanks all, 60 mg of predizone and maybe for a week. I'm on my way to the Hospital now.